Worried about my carer brother

Hi Everyone

My Brother has been caring for his wife who has friedreich’s ataxia he married her knowing he would be her carer as her condition steadily worsened, she is currently Wheelchair bound and has type 2 Diabetes as well as other health issues, the whole house is designed around her my brother sleeps on a mattress on a board with wheels on so it can be rolled under her bed to be out of the way for access to her for lifts etc.
Having been on and off furlough during covid I have been down helping by doing DIY and jobs to keep Her happy repainting bedroom etc sorting the garden building an insulated crafting shed so she can do hobbycrafts and puzzles,which hasn’t been used for months now!
My mum goes down to walk the dog that she wanted every day, She refuses to have carers that she doesn’t know and she has slowly fallen out with all of them including her mum who is now banned from the house, everyone including my niece has to walk on eggshells as she can “blow up” over the smallest thing. Currently a family friend is doing a few hours to help my brother out but my brother still has no time to himself I have offered to stay with his wife while he goes out for a bit of a break but he refuses.Over the last few months he has lost so much weight and survives on complans we buy him food but he doesn’t eat it

my Brother has not had any respite for more than 2 years She has been once but wanted to come home after one day and since has found any excuse not to go. My Niece wrote a heartfelt letter to the doctor asking for help the doctor phoned and my sister in law answered and doctor was told all was well and that was that!

We have been trying to talk to social services but all they did is give more money for respite even though it is paid back unused every year we are still trying to convince my Sister In Law to go to respite and she finally agreed to go once they were reopening after covid we found somewhere locally that will take her but she has know changed her mind yet again she seems blissfully unaware of how low my brother is and how much his health is suffering. I am currently staying away as I’m afraid I will say something that will also get me banned from the house. But I cannot sit idly by for much longer but have no idea how to make life better for all of them does anyone have any idea how to proceed from here?

This is a tricky one Simon! It must be so hard on your brother. Many years ago a friend of mine was in a serious car crash and was left paraplegic. Her husband has been an absolute diamond but it has taken over his whole life caring for her and he is now very thin and very stooped from years of carrying her about and lifting her. She was always quite a direct person and never minced her words but it seemed to us that losing her mobility made her even worse. She calls him all the time to do stuff for her and she wants it doing NOW. How he kept his patience I will never know. They also had a young child when she had the accident so he had to care for her as well as his wife.

Does your SIL’s illness also cause behavioural issues or has she always been on the bossy side? I suppose, like my friend, she is really fed up being in that position and takes it all out on your brother. I know my friend does for sure.

Are they claiming all the benefits they are entitled to? Maybe they could get a support worker in to give him a few hours break now and then. I really don’t know how you are going to convince him to accept help though as I imagine he sees it as his “job” especially as he married her knowing this. Take care.

Maybe she is now so self centred she can’t see what anyone else is doing, feeling, looking?
It is NOT up to her to lay down rules, no one can be forced to care. He has to make her understand he can’t be her 24/7 slave!
He should take time off to keep well. If anything happens to him she will end up in a nursing home, like it or not!!!

Thanks for your reply penny She has always been very controlling but it has steadily got worse over time if my brother tries to argue or offer a different opinion or is slow responding to her call she grows angry and even threatens suicide so my brother makes sure any medication etc is out of her reach and now just goes along with her just to get along daily but he has talked about ending his life and also just walking out but i don’t think he will do either he has left after arguments before but only for a short while (hrs) until she persuades him that she is going to change/do respite but as soon as he is back everything goes back to how it was and the cycle begins again. Our whole family is worried about him and try to help as much as we are allowed but I feel that he is slowly being worn down and he will be in hospital or worse before his wife

Thanks Bowlingbun our only option may be for my brother to leave perhaps. I have offered for him and my niece to stay with me but he has yet to take me up on that he has a key and i have told him if he needs to get out even just for a few hours he can go to my house he has yet to do this. He now never leaves the house as if he does without her he gets accused of deserting her, everyone visits him he never visits anyone now.

Update today finally a visit from social services but my brother did not hear what he wanted from them so he has left the home he hugged his wife and said bye and has left the social worker to sort out care for her he’s at mine know…Family friend is with SIL and social services now…

Your brother has done his best, and is clearly now at the end of his tether.
Such a shame when it comes to this, but we all have our breaking point, and he has met his.
I met mine some years ago with regard to mum’s care. It wasn’t that I didn’t want to care, I just couldn’t any more.

Of course, it should never come to this is Social Services did their jobs properly, did everything the Care Act says.

Tell him to feel proud of all the care he has given his wife.
Keep him with you for a while, let him get some decent sleep, peace and quiet.

Thanks Bowlingbun my SIL is now temporarily in respite care home not too far away for 2 weeks my brother and their daughter are back at home so my niece is not too displaced by all this. The Social Services are trying to arrange care at home for my SIL in the meantime, my brother is adamant he just can’t care for her anymore but we are hoping if a proper system is put in place that takes the pressure off of him he may change his mind but this all depends on what is arranged and my brothers state of mind. So we will see…Have messaged my SIL To let her know we are all thinking of her and are hoping to visit her if possible (covid) so she doesn’t feel abandoned. Good thing is she spoke to her mum during all this so hopefully more good for all involved will come out of this

Your brother need time to sleep, after all his bed on wheels was not going to let him ever get that at home!
Can you sit down with him in a day or two and think about a list of the current issues and what she needs, and he needs.
The only way he is going to get enough decent sleep is to change something. Since Social Services provide limited day care, no night cover, it it’s available with NHS Continuing
Healthcare, then an application for CHC should be made asap! Whoever admitted her to the home should arrange that.
Then there is your brother’s need for “me time” .
Then there’s her controlling behaviour.
Ultimately, given the fact it’s such a serious condition, is it better for her to stay in residential care?
It is HIS choice whether or not to continue to care, or to decide he’s had enough.

Thanks Bowlingbun, this social worker seems to be actually competent and conscientious she is arranging care shifts hopefully this will help my brother but he is unsure whether he is capable of still living with my SIL, he s going to see his doctor this week and perhaps stay with me when SIL returns home and visit her at first. As for my Brother he seems to slowly but surely returning to his normal self and has actually been eating in very small amounts which is wonderful!

Sounds like a really stressful situation, and it is sad that your brother had to reach breaking point. I think there are many carers on here who have reached rock bottom, myself included. It is impossible for one person to care 24/7 and eventually something has to give. I really hope the situation can improve. It is amazing what a break can achieve and your brother is lucky to have a supportive family behind him.

I feel for you and your brother.I think carers feel guilty, somehow to blame and ashamed, feel weak etc. I think it must be so hard for men, my dad years ago was bullied really by my mum. It’s the emotions isn’t it, family or partners, they’re supposed to love you and appreciate you and when they don’t ( because of their own issues/situations) it really hurts, because we care.
It’s like domestic abuse. I hope your brother finds some self worth coming back during these times and is able to remember his own value.
Some counseling might help both of them and you too.